A Heart for Chelsea
by Beverly St. John
I had never heard of Hyper-trophec Cardiac Myopathy until one evening in the spring of 1996. My granddaughter called from Sarasota, Florida, saying her ten year old daughter, Chelsea, had been diagnosed with the disease. I soon learned it was incurable and that a heart transplant was the only hope for Chelsea to have quality life.
Chelsea has always been a very special child. She had been especially close to her great-grandfather, "Da Bill," and to me, having spent a lot of time with us during the first four years of her life. She loved attending church at Brookhaven, playing "church," going to General Assembly with me, and planning to go to Japan with me some day.
Although Chelsea was on a tremendous amount of medication, she was able to live a fairly normal life until March 2000, when a regular visit to her cardiologist for a biopsy revealed the need for a new heart. The cardiologist explained to Chelsea that a new heart is not a cure, but it is a successful treatment. He explained the risks and the strict regimen that would be required for the rest of her life which includes anti-rejection medications, exercise every day, and eating foods that will be good for her. Then he said, "It is your decision to make."
Chelsea brought her five year old sister to Nashville for spring break in April, though her energy level was decreasing and she had to use a wheel chair to navigate her way through the airport. She graduated with honors from eighth grade on June 2, and received five special recognitions.
On June 6, she was number two on the donor list and she knew she was losing ground. After an emergency admittance to the hospital near her home in Sarasota, Florida, she was transferred to her cardiac doctor in All Children's Hospital in St. Petersburg, Florida. She returned to her home to wait. On June 10, my daughter, Jan, (Chelsea's grandmother) and I drove to Sarasota to help Jill, Chelsea's single mom, unaware that as we traveled from Nashville, Tennessee, to Sarasota, Florida, Chelsea had been upgraded from a number 2 to number 1 A on the transplant list. As we were checking into our motel in Valdosta, Georgia, the call came on Jan's cell phone, "We've got a heart." We canceled our reservation and arrived at the hospital in St. Petersburg just minutes before Chelsea was taken for surgery. It was long enough for a hug and a prayer.
Throughout the night the nurse updated us upon the arrival of the heart, the condition of the heart, when they began putting it in, etc. At 7:30 a.m. on June 11, 2000, the word came that they were finishing now and that Chelsea was doing quite well. At 9:00 a.m. the surgeon came and gave us details of the surgery and of Chelsea's condition. The cardiologist then came and instructed us about what to expect in recovery and in the life-long process of caring for herself. "As a teenager, it will be somewhat difficult to stay on this regimen, but remember, it is her life!" the doctor warned. He gave us a list of symptoms to watch for, and he gave us encouragement that she can anticipate a full recovery.
Chelsea has learned the names of each of her medications, the possible side effects of each, and the warning signs of rejection. She experienced rejection once while in the hospital. She takes her own pulse, heart rate, and temperature, and records them daily. Chelsea is taking responsibility for the gift of life she values so very much.
I will be eternally grateful for the many prayers that have been given for Chelsea, her mother, and for me during these past months. I am grateful for the Ronald McDonald House in St. Petersburg, where we found "a home away from home." The doctors, nurses, and volunteers at All Children's Hospital were wonderful. The hospital is named for a quote by Carl Sandburg, "There is but one child in the world and that child's name is all children."
My life will never be the same. I will never hear a hospital helicopter again without remembering they are angels of mercy saving a life or bringing an organ to a dying person. I will be a staunch supporter of organ donation associations that encourage people to become donors. I will remember the prayer that my husband, Bill St. John, uttered every day during his seven year illness, "Thank you for doctors, nurses, hospitals, and medicine," and I will make it my daily prayer too.
While thanking God for a new heart for Chelsea, my heart aches for that family who lost a son or daughter, a sister or brother, or a great grandchild, that made it possible for Chelsea to have a new opportunity for life.
Chelsea Weisz' new opportunity for life opened the door for her to begin her freshman year of high school in August. She will have blood and heart checks weekly as well as physical therapy. Now, perhaps, before I am too old to travel, we will take that dream trip to Japan some day.
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